New Law Sponsored by Senator Mayer Establishes ALS Research & Education Fund

Shelley B. Mayer

October 10, 2018

Governor Cuomo signs State Senator Mayer’s bill inspired by ALS advocate Pat Quinn

WESTCHESTER, NY-- Governor Andrew Cuomo signed into law a bill State Senator Shelley Mayer sponsored which establishes the NYS ALS Education & Research Fund. The new law also creates a convenient way for New York State residents to donate to the fund directly through a check-off box on personal or corporate income tax forms.

“I was inspired to sponsor this bill by my friend Pat Quinn who is an exemplary profile in courage while battling ALS and advocating for others affected by the disease. My hope is that new donations collected through this fund will contribute to breakthroughs in research that will finally shed light on causes and treatments for ALS,” said State Senator Shelley Mayer (D-Westchester). “Thank you to Governor Andrew Cuomo for recognizing the importance of increased funding for ALS research. Thank you also to Democratic Conference Leader Andrea Stewart-Cousins and my Senate colleagues who unanimously supported this bill.”

ALS (Amyotrophic Lateral Sclerosis), more commonly known as Lou Gehrig’s Disease, has been identified for over 150 years, but still no cause, treatment, or cure is known. The neurodegenerative disease affects motor neurons which send signals from the brain to muscles throughout the body. As the motor neurons degenerate and aren’t able to properly send signals, the brain loses the ability to control muscles, and the person may lose the ability to move, eat, speak, or breathe. Those diagnosed with ALS are expected to die within two to five years after diagnosis.

Donations collected through the ALS Education & Research Fund will be distributed annually to two New York State nonprofits devoted to ALS research and advocacy: the Greater New York ALS Association and the ALS Association Upstate New York Chapter.

"The passing of this bill is another step in the right direction to defeat ALS. Thank you to the Governor for signing the bill today, but more importantly, thank you to Senator Shelley Mayer for making it all happen. She has been fighting by my side since the first time I met her. It means so much seeing her relentless pursuit of more ALS support. We will continue to fight this disease together,” said Pat Quinn, ALS fighter and Ice Bucket Challenge Co-Founder.

“More than 5,000 Americans are diagnosed with ALS every year. I would like to thank the Governor and my colleagues in the Legislature for recognizing how vital additional funding is for ALS research and education. Tax check-offs have raised millions of dollars for important causes around New York State, and I am eager for people to have an opportunity to help fund ALS research," said Assemblywoman Aileen Gunther.

S.8582/A.398A was sponsored in the Assembly by Assemblywoman Aileen Gunther.

“The ALS Association Greater New York Chapter is grateful for the leadership of Senator Mayer, Assemblywoman Gunther and Governor Cuomo on this important piece of legislation. Funding received from the ALS Tax Check-Off will assist the Chapter in providing critical support services to ALS patients and their families living in New York City, Long Island, Westchester, and the Lower Hudson Valley. We thank our partners and champions in state government and look forward to working together to find a cure for ALS,” said Kristen Cocoman, President & CEO of the ALS Association Greater New York Chapter.

“The New York State Tax Return donation check off helps not only raise New Yorkers’ awareness of this under-recognized disease, it helps the Upstate New York Chapter provide critical programs and services to help improve the quality of life for individuals and their families coping with ALS,” said Elizabeth Krisanda, Executive Director of the ALS Association Upstate New York Chapter.

"We cannot stress enough the importance of the recent bill establishing ALS education and research sponsored by State Senator Shelley Mayer. Thousands of families in the U.S. alone are affected by Amyotrophic Lateral Sclerosis every year. Every 90 minutes someone is diagnosed and yet many have yet to learn about this fast progressing neuro-degenerative disease that does not discriminate and affects people of all ages. There are significant costs for medical care, equipment, and home health care, therefore raising awareness and supporting the patient and family along their journey with ALS is crucial. Thank you Senator Mayer for recognizing the importance of expanding ALS education among the general public, as well as making it convenient for all to contribute to the fund," said Chris Curtin, Service Director, and Ellen DiCicco, Program Director, of the MAC Angels Foundation.